Tag Archives: disability

Think About Pink

I just came across this article from the New York Times in an old email folder and thought it well worth posting here.  I wonder if you agree with the author’s sentiments – I do!

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Think About Pink (NYT – November 12, 2010)

By PEGGY ORENSTEIN

A friend of mine’s 12-year-old daughter has taken to wearing a bracelet, one of those rubber, Lance Armstrong-style affairs, that says on it, “I ❤ Boobies.”

“Oh, yeah,” she said, vaguely, when questioned about it. “It’s for breast cancer.”

Really?

It’s hard to remember that, not so long ago, the phrase “breast cancer” was not something women spoke aloud, even among themselves. It wasn’t until the early 1970s, with the high-profile diagnoses of the former child star Shirley Temple Black, the first lady Betty Ford and Happy Rockefeller that the disease went public. A short time later, Betty Rollin, an NBC-TV correspondent, published the groundbreaking memoir “First You Cry.” Back then, her grief over losing her breast and the blow cancer dealt to her sex life was greeted with hostility by some critics and dismissed as frivolous. Mammography was just coming into use to detect early-stage tumors. The American Cancer Society was still resisting the idea of support groups for post-mastectomy patients. A woman like Rollin, some said, was supposed to be grateful that she qualified for a radical mastectomy, stuff a sock in her bra and get on with it.

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow. There were the pink teddy bears that, as Barbara Ehrenreich observed, infantilized patients in a reassuringly feminine fashion. “Men diagnosed with prostate cancer do not receive gifts of Matchbox cars,” she wrote in her book “Bright-Sided.”

Alternatively, there are what Gayle Sulik, author of “Pink Ribbon Blues,” calls “She-roes” — rhymes with “heroes.” These aggressive warriors in heels kick cancer’s butt (and look fab doing it). Like the bear huggers, they say what people want to hear: that not only have they survived cancer, but the disease has made them better people and better women. She-roes, it goes without saying, do not contract late-stage disease, nor do they die.

That rubber bracelet is part of a newer, though related, trend: the sexualization of breast cancer. Hot breast cancer. Saucy breast cancer. Titillating breast cancer! The pain of “First You Cry” has been replaced by the celebration of “Crazy Sexy Cancer,” the title of a documentary about a woman “looking for a cure and finding her life.”

Sassy retail campaigns have sprung up everywhere, purporting to “support the cause.” There is Save the Ta-Tas (a line that includes T-shirts and a liquid soap called Boob Lube), Save Second Base, Project Boobies (the slogan on its T-shirts promoting self-exam reads, “I grab a feel so cancer can’t steal,” though the placement of its hot-pink handprints makes it virtually impossible for them to belong to the shirt’s wearer). There is the coy Save the Girls campaign, whose T-shirt I saw in the window of my local Y.M.C.A. And there is “I ❤ Boobies” itself, manufactured by an organization called Keep a Breast (get it?).

Sexy breast cancer tends to focus on the youth market, but beyond that, its agenda is, at best, mushy. The Keep a Breast Foundation, according to its Web site, aims to “help eradicate breast cancer by exposing young people to methods of prevention, early detection and support.” If only it were that simple. It also strives to make discussion of cancer “positive and upbeat.” Several other groups dedicate a (typically unspecified) portion of their profits to “educate” about self-exam, though there is little evidence of its efficacy. Or they erroneously tout mammography as “prevention.”

There’s no question that many women, myself included, experience breast cancer as an assault on our femininity. Feeling sexual in the wake of mastectomy, lumpectomy, radiation or chemo is a struggle, one that may or may not result in a new, deeper understanding of yourself. While Betty Rollin acknowledged such visceral feelings about breasts, she never reduced herself to them. And in the 1990s, the fashion model Matuschka’s notorious photo of her own mastectomy scar (published on the cover of this magazine) demanded that the viewer, like breast-­cancer patients themselves, confront and even find beauty in the damage.

By contrast, today’s fetishizing of breasts comes at the expense of the bodies, hearts and minds attached to them. Forget Save the Ta-Tas: how about save the woman? How about “I ❤ My 72-Year-Old One-Boobied Granny?” After all, statistically, that’s whose “second base” is truly at risk.

Rather than being playful, which is what these campaigns are after, sexy cancer suppresses discussion of real cancer, rendering its sufferers — the ones whom all this is supposed to be for — invisible. It also reinforces the idea that breasts are the fundamental, defining aspect of femininity. My friend’s daughter may have been uncertain about what her bracelet “for breast cancer” meant, but I am betting she got that femininity equation loud and clear.

I hate to be a buzz kill, but breast cancer is just not sexy. It’s not ennobling. It’s not a feminine rite of passage. And, though it pains me to say it, it’s also not very much fun. I get that the irreverence is meant to combat crisis fatigue, the complacency brought on by the annual onslaught of pink, yet it similarly risks turning people cynical. By making consumers feel good without actually doing anything meaningful, it discourages understanding, undermining the search for better detection, safer treatments, causes and cures for a disease that still afflicts 250,000 women annually (and speaking of figures, the number who die has remained unchanged — hovering around 40,000 — for more than a decade).

As for me, I bear in mind the final statement that a college pal of mine who was dying of breast cancer (last October, in the midst of all that sexy pink) made to her younger brother. She was about to leave two young sons to grow up without a mother; her husband to muddle through without his wife. She could barely speak at the time, barely breathe. But when her brother leaned forward, she whispered two words in his ear: “This sucks.”

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As a breast cancer survivor myself I can relate to Peggy Orenstein’s feelings.  While I applaud the efforts of various foundations to raise money to help with research into the causes of, and hopefully one day a cure for, breast cancer I think there is definitely over-kill in the way pink is used to push the message about early detection, mammography and so on.

Where is the support for those (mostly) women who are living with the disease and/or the effects of treatment?  Many people don’t realise that while certain drugs can effectively kill the dreaded cancer cells (at least for the time being) there are often permanent and distressing changes that have to be lived with that impact on quality of life.  But the message seems to be that these people should be grateful that they’ve survived.  As I’m sure they are – but at what cost?

I’d love to see a PINK campaign that acknowledges and validates the reality of life for someone who has or has had breast cancer.  Life definitely isn’t all roses (pink or otherwise) and everyone deserves the recognition that whether you’re on your death bed or simply struggling to get through treatment that will make you better, it does indeed “suck”.  Big Time.

When I wrote my book, Journey to Me, I was advised to “tone it down”, to take out a lot of what I’d written about what it really was like going through surgery and chemo.  I stuck to my guns though because I was fed up with people pussy-footing around what it’s really like.  I would have handled things a lot better if I’d been better prepared for the shock of seeing how my chest was concave post-mastectomy (having prepared myself for it to be flat), losing my hair (the worst moment was when it started to fall out in the shower and clogged the drain), the humiliation of suffering uncontrollable diarrhoea and having to wash my bedding at 2 o’clock in the morning…

Pink campaigns to educate women about how to reduce the number of people who are diagnosed with breast cancer are all well and good but where are the campaigns to raise awareness of the need for people to know how to cope with the actual disease?

Yes, I did get through it, and that’s a big part of the message I wanted to get out there; that if you do survive you can go on to live a fulfilling life.  But I will NEVER say that I’m grateful that cancer gave me the opportunity to forge the great life I have today.  I would much prefer to have got here without cancer, thanks very much!

And some people, like Peggy Orenstein’s college friend, don’t survive; that needs to be talked about too.   So let’s all push for pink campaigns that address the down and dirty reality of breast cancer and stop pretending that it is less than it is – a truly traumatic time in anyone’s life.

(Journey to Me can be purchased through http://www.janegillespie.net)

Jane Gillespie © 2013

DISABILITY AND GRIEF

THOUGHTS FROM A PARENT OF AN ADULT CHILD WITH PRADER-WILLI SYNDROME

I am currently experiencing a resurgence of grief at the impact that my daughter’s condition (Prader-Will Syndrome) is having on her life today.

Prader-Willi Syndrome (PWS) is a fairly rare genetic disorder resulting from an abnormality on the 15th chromosome.  The result is a malfunctioning of the hypothalamus region of the brain, leaving affected people with an appetite control centre that doesn’t function.

When Katherine was born she was like a tiny rag doll, with no discernible muscle tone at all.  She had no sucking reflex so required tube feeding for the first five weeks of her life.  There are several syndromes that present with similar symptoms to PWS in infants, so we weren’t given a definitive diagnosis until she was a year old.

Some of the characteristics that Katie shares with other people with PWS are:

  • Delayed milestones, e.g. didn’t walk until she was 35 months.
  • If given the opportunity she will find and eat food anywhere she can.
  • She is short (147 cm) and has extremely small hands and feet.
  • She has a high percentage of body fat, with a corresponding lower percentage of lean body mass and therefore she gains weight really easily.  She weighs around 125 kg.
  • Due to her reduced muscle mass she has a very low metabolic rate and therefore only requires 60% of the energy intake of her peers.  She desires about ten times this amount.
  • She has never gone through puberty (she is now 35).  One consequence of this is quite child-like behaviour at times.
  • Classified as borderline intelligent.  She is VERY smart in some regards, but her childish reactions to certain situations means she can present as being about as mature as a 9 year old.
  • She is a ‘skin picker’.
  • She can be stubborn, argumentative, manipulative, and repetitive and chatter incessantly.

As soon as she was big enough to be able to access where we kept food we put a lock on the fridge and pantry and everything she ate was closely monitored.  Her insatiable appetite set in when she was about six.

I felt I had to eat the same way that she did so that she didn’t think she was the only one in the family who couldn’t eat certain foods.  This created such a problem for me that I developed an eating disorder (compulsive over-eating).  It was almost as though I too had some of the symptoms of PWS because of my obsessive thoughts about food and inability to stop eating once I started with certain foods.  As soon as Kate went to sleep I’d have my head in the pantry or fridge practically inhaling food that I wouldn’t eat in front of her. I still battle with this condition.

When Kate was growing up I made the mistake of thinking that I was the only person who could take care of her.  Just before her 11th birthday my marriage ended and I placed even more importance on “being there” for her, especially as her two older siblings no longer lived at home.  This put me in the position of not really having any life of my own.

Five years later I was diagnosed with breast cancer.  I came to realize that if I died Katie would be totally lost because I had made her completely dependent on me.  The sobering truth is that we had an unhealthily enmeshed relationship and were totally co-dependent.

To ensure my recovery I sent her to live with her father and stepmother.  This was the hardest thing I have ever done in my life and I felt incredibly guilty, as though I had abandoned her, but I knew that if I were to survive I had to give both of us a life independent of each other.

A year later I brought Kate to Sydney where she was accepted as a client of an organization that assists people with disabilities to live independently.  With their support she has lived independently from her family for the past 17 years.  The most important thing we have learned is that she can survive without me.

However, given her current situation, without the level of support that she now requires, it is increasingly unlikely that I will die first because her health is becoming seriously compromised.

In the past 20 months she has been hospitalized five times because she has developed cellulitis.  This occurs as a result of her picking at leg ulcers or because no one has been available to check to see that she puts on clean compression stockings every day and washes the soiled ones.  The number of weekly carer hours (drop-in only) assigned to her with her current service provider has been reduced from 22 to six hours per week.  This is despite Kate recently being assessed as requiring 46 hours of support per week plus a sleep over at night.

We are in the process of applying for funding for her to move from independent living to a group home, where she will receive 24 hour care.  This has now become urgent if her health isn’t to deteriorate even further.   I am feeling increasingly anxious about her future and will feel much calmer if I know that she is receiving appropriate care that will be ongoing when I am no longer around to advocate on her behalf.

When Kate was born we were not offered any form of psychological support.  We were just expected to ‘get on with it’.  I believe that this contributed to my diagnosis of breast cancer; having nowhere to process the loss of hopes and dreams we had for our little girl left an open wound for many years.  At least I now have access to counselling around the grief I’m experiencing as my daughter’s current situation challenges us to find a solution that will allow her the best quality of life possible in her circumstances.

There are many parents who are in worse circumstances as they are still caring full-time for their disabled children, despite advancing years.  I urge anyone who is in this situation to seek counselling and advice on how to find suitable care for their children in the future.

Jane Gillespie © 2012

http://www.yourlifecelebrated.com.au